This morning I tried to buy opera tickets as a surprise for Evan (he is a major fan), and all accessible seats were sold out. I know it's not the end of the world, or even cause for tears. Operas are clearly a luxury. Still, incidents like this chip away at my loved ones' assurances … Continue reading The Opera and Mosquitoes
My enunciation is getting rough. The letter "s" is my particular nemesis. I slur and lisp so badly, I have stopped using plural forms, and I avoid contractions. This afternoon, though, my sloppy "s" saved the day. By 4:00, it felt like everything that could go wrong had already happened. A scheduling error left me … Continue reading Wheels
Today I bought shoes for the first time since my diagnosis. It was also the first time I bought shoes I would not actually wear for walking. My new sandals will just serve as a barrier between the soles of my feet and my wheelchair's foot plates. No more worries about arch support or gaping … Continue reading A Pashmina For My Appendix
My new coping mechanism for the Cough Assist exercises seems to be a success. As soon as the mask goes on, I close my eyes, and I let myself sink into the whooshing sound. I pretend I need the mask because I am diving impossibly deep in a cold, dark sea. I won't see much … Continue reading Coping and Coughing
Recently, I got my Cough Assist breathing machine. It will help prevent me from getting pneumonia and exercise my lungs to keep them strong (you know, since I'm not doing yoga and cross training so much lately). It pushes air into my lungs and sucks it out, forcing me to breathe deeply as though running … Continue reading Cough Assist
ALS doesn't just a destroy your body; it can also destroy your sense of self-worth. As I need more and more care, it is hard to believe I am not a burden. My sense of value is under constant siege. Fortunately, I have found that kind words often come when I least expect them and … Continue reading Remembering Who I Am
Entering the labyrinth of vintage furniture store Lounge Lizard, where the test begins. Do not be distracted by baubles, for the path is fraught with many dangers and temptations. You see, the ultimate test of wheelchair agility is successfully navigating a vintage store without breaking anything... Even when adding a tiny dent might drive the … Continue reading The Wheelchair and the Labyrinth
Warning: Excessive Marvel references ahead. This is not the story I wanted to write today. I planned on sharing something emotional and joyful. It was going to be a bigger piece, and I looked forward to a long stretch of appointment-free hours to get it done. However, ALS doesn't care about plans. Like Loki in … Continue reading Welcome to the Helicarrier
Lately, I've been worrying a lot about my identity. So much is changing at what feels like breakneck speed. My body in particular is alien to me. I swing between thinking I am an ALS research guinea pig, a robot incorporating new mechanisms to extend the life of what is clearly a junker, or, most … Continue reading Far From FDR
"You do not need to leave your room. Remain sitting at your table and listen. Do not even listen, simply wait, be quiet still and solitary. The world will freely offer itself to you to be unmasked, it has no choice, it will roll in ecstasy at your feet" - Franz Kafka. Those of you … Continue reading Don’t Talk-A-Thon: Part 3
How I Live Now: Life With ALS 